This morning, we will all meet as a group at The Washington Club to be briefed on our visit to Capitol Hill and then we will head to Congress to deliver our messages. Our Nevada delegation consists of Robert and Carrie Ostrea of the Little Miss Hannah Foundation, based in Henderson, and Hugh and Chris…
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Rare Disease Legislative Conference
The Rare Disease Legislative Advocates (RDLA) organized a fantastic conference today, held at the historic National Press Club in Washington, D.C., designed to empower patient and parent advocates to be more active in the legislative process. Presentations by successful advocates such as Anthony Castaldo from the U.S. Hereditary Angioedema Advocates, Emil Kakkis from the Everylife…
World Rare Disease Day Washington Kickoff Event – Here.Us.Now.
Monday night’s screening of Here.Us.Now., hosted by the Rare Disease Legislative Associates, launched a weeklong schedule of events in Washington, D.C. for rare disease advocates to raise awareness of the importance of rare disease research. The documentary features a Northern Nevada couple raising twin daughters afflicted with the rare Niemann-Pick C disease. Hugh and Chris…
Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease Awareness
This year, I will be representing the Little Miss Hannah Foundation at the Legislative Conference & Lobby Day, organized by the Rare Disease Legislative Advocates (RDLA), located in Washington, D.C. This will be a fantastic opportunity to join forces with other rare disease groups and parent advocates to meet with members of Congress to educate…
Newborn Screening Saves Babies, Help Save Newborn Screening
Please take just a minute to sign this and help ensure the vitally important activities of SACHDNC. This is where life saving decisions about newborn screening are made. Please sign and share. The SACHDNC is the only national venue where parents can contribute their experiences and perspectives to the public deliberations on newborn screening. In…